long day

our day started at 3:00am. Brooke woke up and didn't go back to sleep. she has been very restless and agitated.  come 7:00a.m. I was feeling the effects of just 3 hours of sleep. I knew several friends had been praying, and knowing I needed the encouragement to finish the day and finish well I called on them for help. by 1:00p.m. brooke was less frustrated. however, just over an hour a go... she has been extremely upset! I gave her some loritab thinking she was in back pain. she's very aggressive and verbally upset (yelling). she still has not slept since 3am.. and neither have we.  i just hurt for her...wanting her to be comfortable, at ease, and especially I want her to sleep. she has been thru a lot in the last week but I'm confident the Lord is listening..and in His timing will make all well. 

whatever it takes

recovery with brooke continues to be a constant struggle. between her behaviors hitting her face and her wanting to get to her back (partially because of a rash due to the self-adhesive dressing) it is a constant redirection, or holding her arm temporarily. today,  for example, after waking up at 5am, bill and I were laying in the bed with her consoling her, holding her hands until she drifted off to rest again. she ate some breakfast which consisted of fruit, yogurt, and a slice of pizza. she kept wanting to touch and scratch her back and hit her face. it was challenging. we gave her a shower to make her feel better then, the LT staff came at 10;30 and stayed til 1:00. during this time, I got her lunch together, did laundry, and sat in my hammock for a bit. our afternoon was a bit more in tense for she got more unsettled, so we gave her some medication to calm her down. I made her dinner, she ate well but behaviors have increased again this evening,  I cannot lie, at times, it is extremely stressful and I wonder if we made the right choice of going thru with surgery. you question everything at times like this.  on a brighter note.. she is by my side and I desire to do everything to help her get thru this...and I will do whatever it takes. 

collapse

every now and again I see how helpless brooke is without someone with her at all times. a few years ago our whole family, including brooke, went to Nashville. while visiting, we went to Opryland Hotel. the hotel is my moms favorite, so we enjoyed walking around seeing shops and enjoying each others company. we decided to take the elevator up to another floor and before you know it Brooke had gotten in the elevator and the doors shut!  within seconds my mind raced to what could've happened when the doors opened again on another floor without us.  she wouldn't know where she was. she wouldn't be able to say who she was with or how to find her family. and at the time, she would not have been able to say her name to those trying to help her. helpless. however, we quickly pushed the button and the doors opened before it speed off to another floor. I remember grabbing her, holding her, telling her it was "ok." not only is Brooke helpless, but so am I. today a dear friend said something to me that reminded me of my helplessness. the phrase she said was, "collapse in His arms." being the thinker that I am I looked up the word "collapse." Webster puts it this way, "to fall abruptly, to break down completely,  to cave or fall in, to fall helpless." I couldn't help but see myself, or those that know Christ, fall helplessly in His arms..almost like i was fainting.  I love the idea that Jesus is my all and all. I love the fact that when I fall helpless or when I'm wondering helplessly as Brooke does...that He is there without any hesitation. and, in doing so there's no need for me to speak or utter a sound...He knows.  its then He grabs me, holds me, and tells me, "you are ok."

thank you

Brooke has done so much better being at home. we are thankful/grateful that some of her support staff are helping out daily. her school, the learning tree, are coming over twice a day for a few hours to sit and help her. someone needs to be watching Brooke, even while sleeping because she still is exhibiting behaviors (hitting face) and wanting to scratch her back. speaking of which, Brooke has developed a rash on her back, either by the adhesive or iodine. it really is irritating to her. yesterday, after putting some cream on her back she hollered out, "thank you!" it was so appropriate and it made me smile and laugh:) I bought some new dressing for her back, so hopefully, coupled w the anti-itch cream she will be doing better.   she slept so well last night. it was the best sleep she has had since Monday. rest can do a lot of good, I've heard:) she woke up briefly, lifted herself up, got out of bed and went to the bathroom. I was shocked! she is still asleep:) today, we will do more waking and sitting, plus, the doctor said she can take a shower!! she's been scratching her head so much...I know she'll feel tons better afterwards.  I didn't really tell you much about the actual surgery. dr. nimits said he was able to correct 80% of her curve with the placement of 2 rods. she did not have to have any blood transfusion.  that was huge! she lost a bit, but they were able to save hers. all in all, the surgery went really, really well! I'm so thankful for skilled surgeons and nurses.  I'm so content caring for my girl. she is the brightest spot in my life and I love her dearly. Im so thankful for the Nelson's, the M's, and Rene and Patrick for taking care of our job responsibilities at the ABCH so we can be with Brooke during her recovery. I love you all. 

home

it's funny to me that the day surgery was originally set is the day we came home. it sure is good to be home.  these past couple days have been a journey. yesterday Brooke went to a room. we were suppose to stay there til Saturday or Sunday; but, don't tell Brooke she'll change it on you. last night she couldn't rest. her behaviors (from being in a different place) were making things very challenging. since we could not use wrist restraints her face, her arms, my arms, hands, and the nurses were getting a beating. it got better once she went to sleep but come "vital rounds" at 2:00am she got heavily upset. this in turn got me upset at the circumstances because she just doesn't understand. by 3:00 she was still going strong. after trying everything to get her comfortable I asked for some pain meds for her. at 4:00 she is still upset and gets another round of medication. by 5:30 I am mentally, physically exhausted. I asked the nurses for a transfer back to ICU. knowing her hands would be restrained and she wouldn't be harmful to herself, most importantly, and to others. they told me it couldn't happen. she was stable enough to be on a regular floor. however, they would get in touch with my doctor and ask for a transfer.  long story short...brookes doctor said "you are free to go! she is medically stable enough to leave."  wow.  we basically pulled everything together and got our orders to leave.  the ride home was good. Brooke walked right in and laid in the bed. her words, "it's ok." (theres much more to share, but later... now we rest)  thanks for your prayers! 

walking day

Brooke had a good day yesterday. with help of a physical therapist she was able to sit on the side of the bed, take 2 steps, and sit in a chair for 30 minutes. we had hardly any behavior problems with her yesterday. go Brooke! she has continued to say, "it's okay" throughout her day; however, yesterday she formed a sentence of "I wanna go". I love those random sentences that are just too far in-between.  yesterday afternoon she took a few bites of solid food. even last night she had a little bit of food.  last night seemed hard for her. she was moaning a great deal so they gave her extra medicine to ease the pain. she didn't sleep really well last night.  this morning they removed the draining tube from her back which made her pain increase. they gave her extra medication. bill was here last night and early this morning.. he told me as we switched out that she kept asking for me. that's just precious.  today is a big day. she'll start walking today. I can't wait. sorta like your one year old learning to walk-for-the-first time-can't-wait. after she walks she'll go into a regular room.  pray that the Lord gives brooke understanding, peace on every side and that we have little to no behaviors as we transition to another floor.  thank you!!

today's goal

today Brooke is doing really well. I think her fear from yesterday has escaped her and she is much more at ease. however, today's plan is to get Brooke sitting up in the bed and possibly taking a couple steps to sit in chair, so this may disturb her some. the PT will come sometime today and encourage this movement.  her doctor wants her to stay in ICU again tonight. then to a regular room some time tomorrow. she will be the hospital, more than likely, til saturday. thank you for your continued prayers. 

tomorrow is coming..

we are now in ICU. after we got in, she started to be rather alert. she kept saying, "it's okay," seemingly to try and convince herself that she was. along with her alertness came moaning and tears. she was given morphine and soon after seemed more comfortable. she has the strength of a horse and, at times, is pulling herself up to sit. with encouragement we are helping her just to relax.  she has gotten sick twice because of medication. each time, having to change linen which upsets her. the language barrier is making me mad at autism. I wish I could jump in her head for a moment. we have her hands tied down because in the past she has pulled out IV's straight out of her arm. this, I think upsets her more, but I'd rather her be safe. my prayer is she stop fighting the pain herself and try and rest. i know she has got to be so tired. we will be in ICU til tomorrow sometime (if she is doing well).  thank you for your continued prayers. I know the Lord has her. she is a trooper and so brave. today has been tough, but tomorrow is coming. 

surgery update

Brooke has done remarkably well this morning..laughing, smiling, giggling.  she went back around 7:30 to put her to sleep. an ENT doc has already reported that she did not have anything lodged in her nose. he removed large amounts of wax from both ears.  they just called and said the surgery has already started and will report back in 1 hour. 

may 22, surgery set

update: surgery set for Brooke, Tuesday May 22. we will be at womans/children's in our area. arrival is 6am with a 4 hour surgical procedure.  the MRI shown she was able to go on with the surgery. it Also showed that the majority of the scoliosis is lumbar area (mid to lower). therefore, the rod will not go all the way up towards the neck. this will give her some mobility issues. we will know more about that during her recovery. after surgery she will be in ICU then to a regular floor if there are no complications.  we are confident the Lords hand was in the move of the surgery to tuesday and confident she will do fine.  I will be blogging throughout the day tomorrow.  thank you for your prayers, love, and concern!! 

hard day

Brooke's MRI went well. once the IV was in she drifted quickly. the procedure lasted about an hour. then, following, she had another small procedure done. they will use this scan as a guide/tool for the surgery on Friday.  apart from today's test, Brooke's behaviors have increased dramatically since yesterday. it's very odd behavior as I saw and as I heard her staff report.  for several months now she has been hitting her face pretty significantly. her staff implemented a helmet procedure to protect herself. however, yesterday she poked at her face so badly her nose started to bleed. what made it strange was her "giddy" behavior. today I even noticed she was extremely happy throughout each behavior displayed. typically, her facial expressions/emotions are complete opposite of what we have seen in the last 2 days.  this, and other circumstances, are going on that are making me question and seek answers in order to help her.  today was hard for her.  today was hard for me. 

it's the little things.

it is the little things in life.  a few weeks ago, bill, the boys and I went to gulf shores on our off time/spring break. it was nice to be away from our area and spend it focusing on the boys and of course...the beach.  one afternoon, ethan wanted me to sit in the hot tub with him. I went...but what you don't know about me is that I really don't like "public" hot tubs.  after getting in, a couple of girls got in as well. we sat quietly. one of the girls commented on Ethan's "Jesus" shirt. I then started listening to their conversation. I'm such an ease dropper. haha.. they spoke of many things... missions, boys, beach, and etc.. Then, one of the girls said, "could you fix my tape?" that was weird... I thought to myself. I watched her get out of the hot tub and noticed she had a long piece of surgical tape down her spine.  before she walked off, I blurted out, "hey, did you just have back surgery, like scoliosis?" she responded, "yes ma'am I did in January." I couldn't believe it. the chances of meeting someone like that was slim. well, there's more. I asked her lots of questions, and she was sweet to answer and share her experience. I told her of brooke and the reason of my inquiring mind. I told her to have fun and she left. moments later, she walked back in the pool area and asked, "I don't mean to seem weird, but can I ask your daughters name so I can pray for her?" wow! really! are you an angel? she then told me .. can you tell her that ... "she'll be just fine." "yes!" I said, "I'll tell her." before she left I asked her age.. "15", the same age as Brooke.  her name was Lindsey... but that day she was God's little messenger of peace.  lindsey, wherever you are... thank you!

mother's day & MRI

had a great mother's day with brooke. she came over for a little visit and had dinner with me and 9 boys. whew! we made it brooke. :)

(in the pictures above she was enjoying her new ipad and a ice cream bar.)

on friday, may 18th, brooke will have an MRI at the hospital. they will put her to sleep for this procedure. we will get the results on the following monday when we go in for pre-surgical appointment. i'm confident it will all go well. please pray for brooke, as next week, we will be letting her know of her surgery thru the use of a story board. thank you!

whats to come

watching her sleep and knowing what's to come in the days ahead are a bit overwhelming to me.  while she rest, her face twitches, she moans, her eyes close harder, her body shakes a bit and her hands stay clasped together on her chest.  before she fell asleep I sang "Jesus loves me" to her. each time I paused to say "yes, Jesus loves Brooke", she chimed in to say her name. beautiful.  there are some things I'm dreading. one that I'm not, being able to sing to her and watch her sleep nightly.  and in confidence i know that Jesus will be doing everything else.